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Living with Li Fraumeni as a Young Adult: Managing your healthcare
Yelena Wu, PhD
Yelena.Wu@utah.edu
Living with Li Fraumeni as a Young Adult: Managing your healthcare - - PowerPoint PPT Presentation
Living with Li Fraumeni as a Young Adult: Managing your healthcare - - PowerPoint PPT Presentation
Living with Li Fraumeni as a Young Adult: Managing your healthcare Yelena Wu, PhD Yelena.Wu@utah.edu Plan for our time together Managing your medical care for LFS now and later Your goals Taking charge & working with your team
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Plan for our time together
- Managing your medical care for LFS now and
later
– Your goals – Taking charge & working with your team
- Guidelines for parents and family members
– Taking care of yourself
- Parent & Teen sessions later on today
– Hands-on activities and discussion
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Living with LFS as a young adult: Medical management
- Frequent medical appointments
- Blood work
- Ultrasounds
- Brain and body imaging
- Cancer treatment
– Radiation – Chemotherapy – Surgery
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- Frequent medical appointments
- Blood work
- Ultrasounds
- Brain and body imaging
- Cancer treatment
– Radiation – Chemotherapy – Surgery Why do all this? Your personal goals and helping you reach your goals
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What are your personal goals and interests?
- How do you want your life to look?
- What do you want to see happen in the next
year?
– In the next 5 years? – Beyond the next 5 years?
- How does LFS fit with those goals?
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Taking charge and working with your team so that you can accomplish your goals
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What do we mean by: “Taking charge”
- Sometimes referred to in the scientific &
medical communities as “Transition”
– Transition from pediatric to adult provider – Transition from parents/caregivers managing your care to you (the patient) managing more of your care
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Taking charge
- Keeping track of your medical information
– Medical summary
- Emergency plan
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Taking charge (continued)
- Medical visits
– Making (& rescheduling) appointments – Think about questions to ask your providers – Be able to answer your providers’ questions – Ask questions about your medical care – Knowing where to go for appointments/blood work/scans and how to get there
- Managing medications
– Taking them – Refills – Keeping track of side effects & communicating with providers about them
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Who is on your team?
- Often differs between people
- Changes over the course of your life
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How to work with your team
- Talk with your team members about your
goals and your concerns
– Including your ‘taking charge’ goals
- Make a plan for how to take steps towards
your goals
- Decide when and how to evaluate progress
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Suggestions for parents and caregivers
- Please Do
– Have conversations about health habits and managing medical care – Ask them to go with you to fill prescriptions – Support them when they call a provider for the first time – Remind them about the skills they are learning – Check in with them before and after appointments – Give them time alone with their provider – Let them raise their own health concerns at visits
- Please Don’t
– Do it for them – Focus only on your concerns for their health
Adapted with permission from Dr. Sarah Beal, Cincinnati Children’s Hospital
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Self-care
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University of Buffalo School of Social Work
- Stress is part of everyone’s life
– Stress can be “good” too!
- Self-care helps us cope with stress
– Especially important when one has a chronic health condition
- Activities to reduce stress and maintain and
enhance short- and long-term health and well- being
Coping with stress
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How can you take care of yourself?
- Think about what self-care activities you enjoy
– Reading a book – Exercise – Hanging out with friends – Listening to music – Writing in a journal – Something else?
- Make time for these activities
- Seek support from mental health professionals
- Dr. Kratz’s talk later today on healthy lifestyles
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Summary
- Set your own goals
– How does managing LFS fit with these goals
- Take charge
– Medical management – Work with your team
- Regular self-care
- Let’s continue the discussion later!
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Acknowledgements
- LFS Association
- Kelsey Zaugg
- Wendy Kohlmann
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Additional resources
- www.gottransition.org
- Short video by Nemours healthcare system on
transition from pediatric to adult care: https://www.youtube.com/watch?v=cjXurYrF MZM
- Self-care TED talks: